Re: Telling Family & Friends

[Guest guest]

I don't have any personal stories to tell but there may be some at this link. http://www.arthritisinsight.com/living/family/ Good luck and God bless.

----- Original Message -----

From: snowdrift52003

Rheumatoid Arthritis

Sent: Tuesday, February 17, 2004 5:51 AM

Subject: Telling Family & Friends

I am finally feeling like I'm ready to start tlaking about my recent RA diagnosis with some (not all) family and friends. However, I find it's a hard topic to bring up! Someone recently said she tells people on a need to know basis, and that makes sense to me. Today I am getting a free massage from a friend who is in massage school, and this will be a good chance to tell her. I am taking a summer trip with my husband's sisters, and I will need to tell them that I may have some activity limitations...I'd be interested in stories of "telling"...how you broke the news to people, reactions you got, people you may wish you hadn't told, etc. Sierra

[Guest guest]

Well.... hmmmmm... my hands told the story .. the right one was so inflamed and my inability to use it was pretty evident, that not too much had to be confided..<G> my walk got so bad.. trying to get in and out of cars... something was evident. i just admitted i have it and didn't wine about it or expect sympathy.. it is just a fact of life. i forever feel grateful that it is no worse than it is as i know a lot of people are a lot worse off than i. just do the things i can do and if it is something i can't do, i simply ask for assistant...... which is very seldom. i suppose if i were in the public more, especially in a job situation, i would be a bit more reticent... however, everyone will probably find out one way or another and i kind of think it is a bit martyrish to put up the big stiff lip and pretend nothing is wrong. most People who are not afflicted with it don't understand the problems anyway, so it doesn't make any difference to them whether you have it or not. it isn't like you have cancer... *that* illness they fear as they know about it, but RA... for the most part, is an almost invisable disease, and it doesn't bring up unwanted sympathy like the big C.

and remember,... being diagnosed as RA is not a death sentence. Many of us live to a ripe old age and by making sure we are eating healthful foods to keep our bodies in as good a condition as possible and doing our medications like we are told, and getting enough exercise to keep our limbs limber, we can hold out for a long time.... and keep a good positive attitude.

a long time ago my family had piled into the old pick up and were driving around over the ranch, we drove up to one of the stock watering pools. It had been a long hot summer and just as i was *about* to say,"my goodness. the pond is nearly dry..." my 13 year old son pipes up with, " wow!!! the pond is still nearly half full!!!! " he taught me more in that moment than i had learned in 34 years!!! it made me realize how negative i had become!

love.. granny lee

PS ..like my Rheumy told me.." well.. i got good news and i got bad news.... you have RA, ......but it is treatable. "

----- Original Message -----

From: snowdrift52003

I am finally feeling like I'm ready to start tlaking about my recent RA diagnosis with some (not all) family and friends. However, I find it's a hard topic to bring up! Someone recently said she tells people on a need to know basis, and that makes sense to me. Today I am getting a free massage from a friend who is in massage school, and this will be a good chance to tell her. I am taking a summer trip with my husband's sisters, and I will need to tell them that I may have some activity limitations...I'd be interested in stories of "telling"...how you broke the news to people, reactions you got, people you may wish you hadn't told, etc. Sierra

[Guest guest]

Hi Sierra,

I probably told people much the same as others, starting with my

significant other, then my family, my close friends, other

acquaintances as it " came up " , and then finally work. I did feel like

I had to strategize my communication somewhat (to use a business-like

term, because that's how it felt), to not overburden the listener

while sharing what I felt comfortable with.

I'd been dealing with sore joints for a number of years before my

diagnosis, so even though it was good to have a label, I'm still

going through the acceptance phase. Since most of my friends are

still youngish, they haven't personally dealt with a chronic

condition. The topic sometimes comes up in social/drinking situations

where I abstain because of my methotrexate -- and feel I need to

explain why I can't drink with them.

It's weird, but once people know what you have, they either never ask

you about it or offer a lot of suggestions -- some good, some bad. My

advice is to find those who can simply listen, and lean on them.

You'll return the favor in good time.

Feel free to write to me -- it sounds like we're in a similar

stage. :-)

> I am finally feeling like I'm ready to start tlaking about my

recent

> RA diagnosis with some (not all) family and friends. However, I

find

> it's a hard topic to bring up! Someone recently said she tells

people

> on a need to know basis, and that makes sense to me. Today I am

> getting a free massage from a friend who is in massage school, and

> this will be a good chance to tell her. I am taking a summer trip

> with my husband's sisters, and I will need to tell them that I may

> have some activity limitations...I'd be interested in stories

> of " telling " ...how you broke the news to people, reactions you got,

> people you may wish you hadn't told, etc.

>

> Sierra

[Guest guest]

Hi Sierra,

I probably told people much the same as others, starting with my

significant other, then my family, my close friends, other

acquaintances as it " came up " , and then finally work. I did feel like

I had to strategize my communication somewhat (to use a business-like

term, because that's how it felt), to not overburden the listener

while sharing what I felt comfortable with.

I'd been dealing with sore joints for a number of years before my

diagnosis, so even though it was good to have a label, I'm still

going through the acceptance phase. Since most of my friends are

still youngish, they haven't personally dealt with a chronic

condition. The topic sometimes comes up in social/drinking situations

where I abstain because of my methotrexate -- and feel I need to

explain why I can't drink with them.

It's weird, but once people know what you have, they either never ask

you about it or offer a lot of suggestions -- some good, some bad. My

advice is to find those who can simply listen, and lean on them.

You'll return the favor in good time.

Feel free to write to me -- it sounds like we're in a similar

stage. :-)

> I am finally feeling like I'm ready to start tlaking about my

recent

> RA diagnosis with some (not all) family and friends. However, I

find

> it's a hard topic to bring up! Someone recently said she tells

people

> on a need to know basis, and that makes sense to me. Today I am

> getting a free massage from a friend who is in massage school, and

> this will be a good chance to tell her. I am taking a summer trip

> with my husband's sisters, and I will need to tell them that I may

> have some activity limitations...I'd be interested in stories

> of " telling " ...how you broke the news to people, reactions you got,

> people you may wish you hadn't told, etc.

>

> Sierra

[Guest guest]

Hi Sierra,

A great website to help friends & family understand what it's like to live with arthritis is: www.butyoudontlooksick.com and click on The Spoon Theory.

My arthritis started in my last semester at college (I had severe symptoms for 3 months before I was diagnosed) so anyone that knew me at school knew something was wrong. My parents knew as well, mostly because I was on my dad's insurance plan (they were in NYC & I went to college in PA). While I was struggling for a diagnosis, we didn't tell my extended family for a number of reasons.

I was diagnosed just before Thanksgiving break, so my parents told my family before I went home. Most people cried because I was so swollen and in so much pain (my dad had to cut my food b/c I couldn't use a knife & fork at the same time).

Currently, most people know I have arthritis. The local paper did an article about me in 11/2002 and the article was so popular they still have it up. People I know call me when someone they know is diagnosed with a chronic illness like arthritis. It's pretty cool.

The decision to tell people about your arthritis depends a lot on the type of person you are and the types of relationships you have. I talk a lot about my arthritis because it is a big part of the person I am and the decisions I make now. For example, I volunteer with the local Humane Society once a month to help with dog adoptions. The woman that schedules adoptions knows about my arthritis so she makes sure I have extra help since I'm not strong enough to walk most of the dogs. The people I actually do the adoptions with know too because they'll see me take my medicine with my lunch and so they understand my limitations as well.

All of the people I work with know about my arthritis also because: (1) I wear sneakers every day to work and (2) I take off for doctor appointments, treatments and tests more than most people.

Sorry for the long email.

Take care,

Steph in VA~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi Sierra,

>

>I probably told people much the same as others, starting with my

>significant other, then my family, my close friends, other

>acquaintances as it "came up", and then finally work. I did feel like

>I had to strategize my communication somewhat (to use a business-like

>term, because that's how it felt), to not overburden the listener

>while sharing what I felt comfortable with.

>

>I'd been dealing with sore joints for a number of years before my

>diagnosis, so even though it was good to have a label, I'm still

>going through the acceptance phase. Since most of my friends are

>still youngish, they haven't personally dealt with a chronic

>condition. The topic sometimes comes up in social/drinking situations

>where I abstain because of my methotrexate -- and feel I need to

>explain why I can't drink with them.

>

>It's weird, but once people know what you have, they either never ask

>you about it or offer a lot of suggestions -- some good, some bad. My

>advice is to find those who can simply listen, and lean on them.

>You'll return the favor in good time.

>

>Feel free to write to me -- it sounds like we're in a similar

>stage. :-)

>

>

>

>

>

>

> > I am finally feeling like I'm ready to start tlaking about my

>recent

> > RA diagnosis with some (not all) family and friends. However, I

>find

> > it's a hard topic to bring up! Someone recently said she tells

>people

> > on a need to know basis, and that makes sense to me. Today I am

> > getting a free massage from a friend who is in massage school, and

> > this will be a good chance to tell her. I am taking a summer trip

> > with my husband's sisters, and I will need to tell them that I may

> > have some activity limitations...I'd be interested in stories

> > of "telling"...how you broke the news to people, reactions you got,

> > people you may wish you hadn't told, etc.

> >

> > Sierra

>

>

>

>

[Guest guest]

, I posted your lead sentence on another message board and got a lot of very favorable comments on the Spoon Theory. Thanks for posting it.

Grandpavan

----- Original Message -----

From: DeNicola

Rheumatoid Arthritis

Sent: Wednesday, February 18, 2004 1:09 PM

Subject: Re: Telling Family & Friends

Hi Sierra,

A great website to help friends & family understand what it's like to live with arthritis is: www.butyoudontlooksick.com and click on The Spoon Theory.

My arthritis started in my last semester at college (I had severe symptoms for 3 months before I was diagnosed) so anyone that knew me at school knew something was wrong. My parents knew as well, mostly because I was on my dad's insurance plan (they were in NYC & I went to college in PA). While I was struggling for a diagnosis, we didn't tell my extended family for a number of reasons.

I was diagnosed just before Thanksgiving break, so my parents told my family before I went home. Most people cried because I was so swollen and in so much pain (my dad had to cut my food b/c I couldn't use a knife & fork at the same time).

Currently, most people know I have arthritis. The local paper did an article about me in 11/2002 and the article was so popular they still have it up. People I know call me when someone they know is diagnosed with a chronic illness like arthritis. It's pretty cool.

The decision to tell people about your arthritis depends a lot on the type of person you are and the types of relationships you have. I talk a lot about my arthritis because it is a big part of the person I am and the decisions I make now. For example, I volunteer with the local Humane Society once a month to help with dog adoptions. The woman that schedules adoptions knows about my arthritis so she makes sure I have extra help since I'm not strong enough to walk most of the dogs. The people I actually do the adoptions with know too because they'll see me take my medicine with my lunch and so they understand my limitations as well.

All of the people I work with know about my arthritis also because: (1) I wear sneakers every day to work and (2) I take off for doctor appointments, treatments and tests more than most people.

Sorry for the long email.

Take care,

Steph in VA~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi Sierra,

>

>I probably told people much the same as others, starting with my

>significant other, then my family, my close friends, other

>acquaintances as it "came up", and then finally work. I did feel like

>I had to strategize my communication somewhat (to use a business-like

>term, because that's how it felt), to not overburden the listener

>while sharing what I felt comfortable with.

>

>I'd been dealing with sore joints for a number of years before my

>diagnosis, so even though it was good to have a label, I'm still

>going through the acceptance phase. Since most of my friends are

>still youngish, they haven't personally dealt with a chronic

>condition. The topic sometimes comes up in social/drinking situations

>where I abstain because of my methotrexate -- and feel I need to

>explain why I can't drink with them.

>

>It's weird, but once people know what you have, they either never ask

>you about it or offer a lot of suggestions -- some good, some bad. My

>advice is to find those who can simply listen, and lean on them.

>You'll return the favor in good time.

>

>Feel free to write to me -- it sounds like we're in a similar

>stage. :-)

>

>

>

>

>

>

> > I am finally feeling like I'm ready to start tlaking about my

>recent

> > RA diagnosis with some (not all) family and friends. However, I

>find

> > it's a hard topic to bring up! Someone recently said she tells

>people

> > on a need to know basis, and that makes sense to me. Today I am

> > getting a free massage from a friend who is in massage school, and

> > this will be a good chance to tell her. I am taking a summer trip

> > with my husband's sisters, and I will need to tell them that I may

> > have some activity limitations...I'd be interested in stories

> > of "telling"...how you broke the news to people, reactions you got,

> > people you may wish you hadn't told, etc.

> >

> > Sierra

>

>

>

>

[Guest guest]

Hi Grandpavan, Glad I could be helpful! Take care,Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~>, I posted your lead sentence on another message board and got a lot of very favorable comments on the Spoon Theory. Thanks for posting it.

>

>Grandpavan

> Say “good-bye” to spam, viruses and pop-ups with MSN Premium -- free trial offer!

[Guest guest]

like i said, some people can and some can't. if you are having trouble walking or other arthritic problems, change your snack to something else and see what happens. if you can't tell a difference within a week, then it's probably not the oranges.

i used to get those little baby carrots for sacks

love.. granny lee

----- Original Message -----

From: Marcia Stoyle

Rheumatoid Arthritis

Sent: Sunday, March 07, 2004 11:40 AM

Subject: Re: Telling Family & Friends

granny lee, your news about orange juice was an eye-opener for me....do you know if having an orange for snack is also to be avoided? I am not a juice person, but an orange after work holds my appetite till supper time. I love my fresh fruit. thanks! gentle hugs, Marcia leo <leo@...> wrote:

, it may help if you explained this to your doctor and get your family members to go with you and have him explain to them the problems you are having. they just don't know and need to be told. o ooe knows until they have it or researches it to find out something about it.

[Guest guest]

, I know how you feel. RA is a disease where you look fine but the pain can be debilitating and sometimes even family don't understand what you are dealing with on a daily basis. You can tough it out or appear like a whiner. Sometimes that seems to be your only option. I have had 7 hip and knee replacements and still people, mostly at work, dont have a clue what an RA victim deals with just preparing for each and every day. Keep fighting and most of all take care of yourself. Exercise, eat right and be with people you enjoy being with. It is easy to let your health go down hill but it is so important that an RA victim stays healthy. All the best, Don

[Guest guest]

I became very depressed when I found out I had RA. I think that's a

pretty typical reaction to finding out you have a chronic disease.

After a while the doctor gave me so-called muscle relaxants to help

me sleep as that was one way the depression manifested itself. I

took them as prescribed and did sleep much better but what he decided

I was better off not knowing was that it was actually an anti-

depressant. Of course it worked but if he had not retired I would

have complained about him.

Today someone told me that if I used shark cartilige my problems

would be gone in 2 weeks.

Annette

--- In Rheumatoid Arthritis , <bmfb4114@y...>

wrote:

> Sierre, when I was told I had RA, I told my husband and sons.

They all said I just need to exercise more and I will be fine. As

time went along they still had the same feeling and a few of the

people they told didn't believe I was sick. Well, at least had this

problem.

>

> One day I tried to get out of bed to use restroom. My younger son

was asleep down the hall and I could NOT move my body from the waist

down. With every breath I could muster up to call him it didn't stir

him at all. I can't breath and yell when this happens.

> After almost 2 hours I was able to pull myself to the edge and

finally get to the restroom. and that was like someone letting me

have chocolate. What a relief.

>

> I wish I didn't have to live with this as well as all the other

problems that make my life so hard to deal with.

>

> Some days i want to give up then my younger son calls just to say

hello and that he loves me and that gives me reason to keep going

> .

>

>

>

snip

[Guest guest]

Annette,

I have learned to ask these type of "Doctors" where they went to medical school. I love how people think they know more than someone who went to college and medical school for 12 years. Keep on pushing and don't let the damned disease win.

Lynette-----Original Message----- From: annette2ca Sent: Mar 7, 2004 9:49 PM Rheumatoid Arthritis Subject: Re: Telling Family & Friends I became very depressed when I found out I had RA. I think that's a pretty typical reaction to finding out you have a chronic disease. After a while the doctor gave me so-called muscle relaxants to help me sleep as that was one way the depression manifested itself. I took them as prescribed and did sleep much better but what he decided I was better off not knowing was that it was actually an anti-depressant. Of course it worked but if he had not retired I would have complained about him.Today someone told me that if I used shark cartilige my problems would be gone in 2 weeks.Annette> Sierre, when I was told I had RA, I told my husband and sons. They all said I just need to exercise more and I will be fine. As time went along they still had the same feeling and a few of the people they told didn't believe I was sick. Well, at least had this problem. > > One day I tried to get out of bed to use restroom. My younger son was asleep down the hall and I could NOT move my body from the waist down. With every breath I could muster up to call him it didn't stir him at all. I can't breath and yell when this happens. > After almost 2 hours I was able to pull myself to the edge and finally get to the restroom. and that was like someone letting me have chocolate. What a relief.> > I wish I didn't have to live with this as well as all the other problems that make my life so hard to deal with. > > Some days i want to give up then my younger son calls just to say hello and that he loves me and that gives me reason to keep going > .> > > snip